I have read that when someone in your immediate family dies, you are forever changed. The loss and the drastic changes in your life affect you in a permanent way. So part of the grieving process is learning to be this new person that you have become.

Elli has been gone nearly ten months. It’s almost impossible for me to get that. I know that she doesn’t live here any more. I know that she isn’t coming back. But, despite my vivid memories of her last days, it’s hard to believe that it actually happened.

But at the same time (this is where I start to feel like split personality), sometimes I look around and grieve just how gone she is. She used to be everywhere.

In the syringes drying on the rack.

In the cases of formula stacked in the pantry and under her bed.

In the cabinet full of her medicines.

In the pile of insurance and hospital and pediatrician and school paperwork that only ever grew larger. Until she died, that is.

In the laundry full of shirts stained with her saliva because she couldn’t swallow it.

In the equipment tucked into every available niche: stander, walker, wheelchair, bath chair, hospital bed, computer, oxygen monitor, breathing-treatment machine, leg braces…. (This is Elli helping with our 2007 gingerbread house from her stander. It put her at just the right height to participate in countertop activities.)

In the always-drying, never-put-away food processor we used to turn everything from hamburger to pizza into a mashed-potato-consistency so she could eat what we did.

In the bizarre vocal stylings of Bob the Tomato and Larry the Cucumber constantly playing in the house and in the van. (Does anyone else find them a little annoying after the 33rd time through?)

Without certain things, like her hand prints on last year’s Mother’s Day card from school or the framed photos of her on our walls, it would almost be like she wasn’t ever here. The hole in our lives is invisible to the naked eye.

But if you talk to any one of us long, you’ll glimpse it. Little Girl shares rather freely, which I think is good for her. We took Big Boy to a karate class to see how he’d like it this week. The school is led by a husband and wife. Apparently Little Girl got into a conversation with the wife, who teaches the children’s classes, about how she used to have a sister but she died.

I don’t know how to be this person yet, this mother of three able-bodied kids who don’t have schedules packed with doctor’s appointments, therapies, blood draws, feedings, and breathing treatments.

I’ve tried a few baby steps into this new world of motherhood. But it has been difficult, especially this summer with so much less to define our days. The break from routine is nice, but honestly (and I never dreamed I’d say this) I haven’t been sure what to do with the time.

When Elli lived here, she needed us to help her do everything. We simply had no time, energy, or financial resources to do much more than the bare minimum. I managed to get Big Boy and Little Girl into some swimming lessons occasionally, once in awhile (on days when Elli was in school) we’d manage a trip to the zoo or a children’s museum, and we all went to church. This is what she needed and we were (mostly) happy to serve her.

Now that Elli isn’t here, our days look totally different. At first, we were all so exhausted from the shock that the bare minimum was still all we could manage: food, laundry, dishes, school for Big Boy.

Ever so slowly, I’ve added things into our bare-bones routine. We found a little local preschool for Little Girl. (She wore a princess tiara on her first day of preschool. I might be the only mother with zero academic goals for my preschooler — I just want her to have fun and make friends.) Then we dog-sat for some friends for a few months. We all needed someone to love on and he definitely fit the bill. In fact, he convinced us that we wanted a dog of our own.

We planned a vacation. A real one with a road trip and hotels and everything. We haven’t done that in a few years what with babies being born and multiple kids having surgeries and all. It was the weirdest thing to plan a vacation without having to research wheelchair accessibility and the nearest hospital. But we really enjoyed the trip. (In fact, the kids keep asking when we can go back!)

Then we delved into something altogether new: extra-curricular activities for Big Boy and Little Girl. They took outdoor swim lessons this summer (Now that they can actually swim, pool outings are a whole new experience. A great new experience.) and we began talking about other kinds of lessons. Big Boy has fallen in love with karate, and Little Girl is going to see what she thinks of dance classes (ballet and tap).

We are trying to be thoughtful about what and how much we let the kids do. I don’t want my life to be regimented by classes, games, and events (which are optional non-essentials) the same way it was regimented by Elli’s medications, feedings, and appointments (which were mandatory and essential). We are a family, and our goal is to support and cheer each other on in each person’s special activities. So for now, each child is allowed one extra at a time. We’ll see how that goes.

One of the things I always knew I needed to do was exercise regularly. This summer, I started walking with our new dog, Xena. (Well, I’m not sure you can dignify what I do with a word as regal as “run.” It’s more like fast walking with a little air and a lot of huffing and puffing.) She’s the best running partner ever — she won’t let me stay in bed. She keeps barking and whining til I get up. No-one else has been willing to be that annoying every day.

It’s going so well that I actually participated in a 5k run (albeit in the stroller division with a friend who didn’t want to actually race) last Saturday. I never dreamed my bad ankles and knees would let me run any actual distance. But going slow seems to be the key. The race was actually fun. I am shocking myself by actually considering training for a 10k at Thanksgiving. (This is the official race photo. No blissful runner’s high smile here. Just tooth-gritted determination to finish running.)

I’m really hoping that once school starts, I’ll be able to work in a couple of yoga classes each week. It’s excellent toning without bulk, which would be a nice compliment to the pure cardio of running.

All in all, this metamorphosis into new personhood seems to be going smoothly. We’re all trying to take things slowly. But I think I’m getting past being overwhelmed by the drastic changes enough to actually enjoy some of the new opportunities… for all of us, not just for the kids.